Nocturnal Musings #23: Out of Hell

I have to go there today.

That place.

That hospital of which I am deeply afraid.

For a follow-up visit with my endocrinologist to check my prolactin to make sure my tumor is still in check, even though my MRI from two months ago (7 months post-op) was clear.

I can already smell the smells. Starbucks, of all things. Alcohol wipes. Plastic tubing. Fluid bags from patients going for walks. I can smell a TPN fifty yards away. Occupational hazard.

I can already see the blindingly white walls and stainless steel everything that provide zero comfort to a terrified patient. And possibly a need for sunglasses.

I can already hear the ever-present music that is supposed to be soothing playing over hidden speakers. Continue reading “Nocturnal Musings #23: Out of Hell”

Friends, Can You Help Me?

I’ll try to keep this short and sweet so as to not burden anyone.

I need help from you, my faithful readers.

The brain fog caused by one of my medical conditions, POTS, a form of dysautonomia, has made it monumentally difficult for me to think. It’s like…my thoughts won’t connect, or certain parts of my brain won’t talk to each other. I can almost feel this void in the middle of my head, like a bridge is out over a river. I can feel an idea, or a sentence starting somewhere, but then it doesn’t get to where it needs to go, and it never materializes. I feel as though I’m stuck with all of these thoughts bouncing around in my head, but they won’t come out or even come to fruition.

I’m not using this as an excuse for my less than stellar writing as of late or for my general lack of writing altogether. I just can’t come up with anything that I think would be worth anyone’s while to read. So I’ve stopped writing. Or I’ll write something and immediately trash it because it’s not of a high enough standard for me to release to all of you.

So here’s where I need your help. Continue reading “Friends, Can You Help Me?”

Is My Illness My Fault?

For me, 2016 was the year of the surgeries and bizarre diagnoses. Three surgeries, to be exact, spanning over a period of four months. Once the surgeries were over, I thought that once I had an adequate recovery period, I would be back to normal. I’d be able to return to work, from which I’d had to take an extended leave of absence, and I could put the entire year behind me as a gargantuan fluke.

But it was not to be. Almost exactly a month to the day after my third surgery, I started experiencing symptoms that very quickly led to a diagnosis of postural orthostatic tachycardia syndrome (POTS). The tachycardia (rapid heart rate), shortness of breath, and presyncope (near fainting) were being caused by moderate hypovolemia (testing revealed my blood volume to be 18% below normal) and severe venous pooling (35% of my blood volume was pooling in my lower extremities; this number should be 5-10% in a normal person with quick resolution within two to three heartbeats).

Why did this suddenly happen? POTS has been linked to certain autoimmune diseases (including celiac disease, just my luck) and has been noted to occur following such events as pregnancy and trauma. However, medical science does not yet know why POTS happens. So what was going on with me? Continue reading “Is My Illness My Fault?”

Give Your Heart a Break

IMG_1239One more time around the sun, one more time passing through National Infertility Awareness Week as an unintentionally childless woman. I guess you could say this is my third time.

It’s an understatement to say that a lot has gotten in the way of my attempts to become a mom.

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Ready for excision surgery!

In 2014, not long after we had starting trying to get pregnant, my battle with endometriosis took the forefront. Within a span of six months, I was hospitalized, diagnosed, and had two surgeries, one of which was out of state with an excision specialist. Then recovery began, and our efforts to get pregnant resumed in 2015.

Needless to say, I did not become pregnant in 2015, and we were baffled as to why not. Continue reading “Give Your Heart a Break”

Share Your World: April 24, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this!

Wanting something to quench your thirst, what would you drink? This is an interesting question, given the fact that I have POTS, which means I take in about 4-5 liters of fluid a day just to be able to stand up. Most of that is Gatorade, with a little bit being water, water with a Nuun tablet, pop, or milk. But of all the beverages I drink every day, Gatorade is the most thirst-quenching for me, probably because my body craves the sodium and other electrolytes.

Complete this sentence: Never In My Life Have I…

Continue reading “Share Your World: April 24, 2017”

A Good Thing

That place still traumatizes me.

Wait, back up. I should start at the beginning.

Yesterday it was finally time for my 7-month MRI following my brain tumor removal last September (and my 7th lifetime MRI at that!) My mom came down a few days ago to spend some time with me while my husband was out of town, and to drive me to my appointments.

I was already stressed out about the day because of the timing. My MRI was scheduled for 9:20 am at a nearby family health center. Originally, my appointment with my neurosurgeon was at 11:40 am at main campus, but last week it was changed to 9:40 am. The office called me and told me it was ok to get there as soon as I could after the MRI. Ok, then…but it still stressed me out because if there is one thing I can’t stand, it’s tardiness. Continue reading “A Good Thing”

2016, In the Style of Personal Journals: March

Way behind in publishing this, but I still want to continue this series.

Last year was a rough year for me due to all the medical problems I had. I poured out my heart and soul into my personal journals, which were my lifeline keeping me somewhat grounded. To give you an idea of what it was really like to go through all that I did, the rest of this entry is only direct quotes from my journals. I plan to do this every month this year. If you want to read the previous months to set the stage, here’s January and February.

Welcome to the inside of my head and heart. Be warned, this is honest and raw.

March 1, 2016: “In other news, I actually got a reply from Dr. F about my lab results…’Well, I think we may have some answers for you! Your FSH, LH, and E2 are all low, which indicates suppression coming from the brain (hypothalamic cause)…This is very different from PCOS and likely reflects a small growth in your pituitary gland (your prolactin was elevated.) This is the most common kind of pituitary growth and is usually NOT CANCER…The next step will be a head MRI (I see you had a normal CT). As long as the pituitary gland looks as expected, we can start a medicine to bring down your prolactin levels and you should start cycling again and be able to get pregnant.’

“So I guess I might have a ‘brain tumor’ after all. I had a feeling this whole time that something wasn’t right in my head.”

March 4, 2016: “Next winter. A point at which I will still be childless, if pregnant at all yet. Which is sad to think about considering everything I’ve been through lately. A few months ago we were so sure that it would be this year.”

March 8, 2016: “I just don’t know what I’ll do if [the MRI] is negative. Given my labs and headaches and other symptoms, I feel like there has to be something there. I pray that there is, because then it can be treated and then hopefully my headaches will go away, I’ll start ovulating, and then be able to get pregnant naturally. No Clomid or anything like that. And we’ll have a beautiful, healthy baby next winter or spring. Even summer would be ok. I just hope to be pregnant by the end of 2016. And everything will be awesome. Life is going to get better.”

March 9, 2016: “‘6 mm area of diminished enhancement in the pituitary gland suggestive of a prolactinoma.'”

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March 12, 2016: “The tumor. I have a brain tumor. I really, actually, truly have a brain tumor. I’m still having difficulty wrapping my mind around that. Just because it’s not cancer doesn’t mean it’s not still affecting my life tremendously. I mean, I missed four weeks of work in two months because of the headaches. And if the medication doesn’t work or I can’t tolerate the side effects, I’ll likely end up having surgery.”

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Evil, expensive drug…

March 15, 2016: “Dr. F is starting me on cabergoline twice a week.”

March 17, 2016: “I’m still having side effects from the cabergoline. The headache wasn’t nearly as bad today, but I still needed Percocet to control it. Today I really noticed lightheadedness upon standing. Still a little nauseous, too, but not nearly as bad as yesterday. I have to admit, I’m still a little overwhelmed with this diagnosis. And as far as the cabergoline is concerned, how long do I try to tolerate these side effects before I just throw in the towel and pursue surgery? But will the med have shrunk the tumor enough that…I have to go off the med and let it grow back? I can’t imagine having to go through all of this again. I can’t do it.”

March 19, 2016: “I was reading another post where someone asked if the tumors ever really go away (are you ever fully ‘recovered’) and if there is light at the end of the tunnel. So far 27 people have responded with a resounding ‘no.’ Well that’s just fantastic. I’m frustrated now. Frustrated that this could turn out so much differently than I thought last week…I’m a walking disaster. Seriously, could things get any worse? (Shut up, of course they can. Don’t tempt fate with this health of yours).”

March 24, 2016: “Stupid amitriptyline. Dr. L had said it can cause nightmares at lower doses. I remember him asking me in the ED a month ago when I was taking 30 mg if I was having nightmares and actually, I was. And they did go away when I went up to 50 mg, for the most part. But now they’re back in full force since I decreased my dose last week. I can’t stand the nightmares. I can’t stand the urinary retention. I can’t stand the twitching. I don’t know how anyone can even tolerate the higher doses used for depression. Any higher dose and I would never pee again.”

March 25, 2016: “I can’t miss any more work. I can’t keep letting everyone down. I want that phase of all of this to be over…I’m sure they’re all sick of hearing about my health problems.”

March 28, 2016: “I just want this to be over. I want to feel like a normal human being again. But I don’t know what I have to do to get there. It’s not like I can slack off at work; that would make things more stressful and that’s not how I roll. Calling off would probably also stress me out more in the long run; some of the worst days I had psychologically two months ago were days I called off and it was the calling off that stressed me out.”

March 30, 2016: “All of a sudden I feel so overwhelmed. And nauseous. And…I don’t know, just not right. I don’t like feeling this way. I don’t know what’s wrong. What’s wrong? What’s wrong? Why do I feel like this? What’s wrong? I’m freezing and shaking. I don’t feel good. I don’t feel right. I’m nauseous. I don’t feel good.”

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